The 2003 Australian Breast Health Survey: survey design and preliminary results

<p>Abstract</p> <p>Background</p> <p>The Breast Health Surveys, conducted by the National Breast Cancer Centre (NBCC) in 1996 and 2003, are designed to gain insight into the knowledge, attitudes and behaviours of a nationally representative sample of Australian women on issues relevant to breast cancer. In this article, we focus on major aspects of the design and present results on respondents' knowledge about mammographic screening.</p> <p>Methods</p> <p>The 2003 BHS surveyed English-speaking Australian women aged 30–69 without a history of breast cancer using computer-assisted telephone interviewing. Questions covered the following themes: knowledge and perceptions about incidence, mortality and risk; knowledge and behaviour regarding early detection, symptoms and diagnosis; mammographic screening; treatment; and accessibility and availability of information and services. Respondents were selected using a complex sample design involving stratification. Sample weights against Australian population benchmarks were used in all statistical analyses. Means and proportions for the entire population and by age group and area of residence were calculated. Statistical tests were conducted using a level of significance of 0.01.</p> <p>Results</p> <p>Of the 3,144 respondents who consented to being interviewed, 138 (4.4%) had a previous diagnosis of breast cancer and were excluded leaving 3,006 completed interviews eligible for analysis. A majority of respondents (61.1%) reported ever having had a mammogram and 29.1% identified mammography as being the best way of finding breast cancer. A majority of women (85.9%) had heard of the BreastScreen Australia (BSA) program, the national mammographic screening program providing free biennial screening mammograms, with 94.5% believing that BSA attendance was available regardless of the presence or absence of symptoms. There have been substantial gains in women's knowledge about mammographic screening over the seven years between the two surveys.</p> <p>Conclusion</p> <p>The NBCC Breast Health Surveys provide a valuable picture of the knowledge of Australian women about a range of issues. The present analysis shows significant gains in knowledge and behaviours relating to mammographic screening, while identifying additional areas for targeted improvement, as in the need to better communicate with women about screening and diagnostic services. Further analysis of additional core topic areas (eg., incidence, mortality, risk and treatment) will provide equally noteworthy insight.</p

Would you like to talk about your future treatment options?' discussing the transition from curative cancer treatment to palliative care

Palliative care focuses on improving quality of life for patients with life-threatening illness and their families. There comes a time when actively pursuing aggressive curative treatment may do more harm than good. The cessation of curative treatment is often viewed as a distinct event; however, current practice guidelines suggest that a palliative approach should be gradually adopted as the disease progresses. The challenge is how to facilitate a sensitive transition from curative to palliative care. On the basis of an extensive literature review, recommended steps for facilitating this transition have been outlined. The recommendations cover: the timing of the discussion; preparing for this discussion; the environment and circumstances of the consultation; initiating the discussion; identifying the information to be provided; responding to the person's emotional reaction; introducing palliative care services; continuity of care; family concerns; cultural and linguistic diversity; concluding the discussion. These steps were based on the best available evidence. However, as there is a paucity of research in this area, only three relevant systematic reviews of randomized controlled trials were identified and only one of these reviews related directly to palliative care. The majority of the relevant research was descriptive evidence. There is a need for more high quality research in this area

Development and pilot testing of a communication aid to assist clinicians to communicate with women diagnosed with ductal carcinoma in situ (DCIS)

Purpose: The literature highlights the confusion amongst women diagnosed with ductal carcinoma in situ (DCIS) about aspects of their disease and treatment and the wide variation in how doctors communicate about DCIS. The DCIS communication aid (CA) was developed to assist clinicians to communicate with women diagnosed with DCIS and to improve women\u27s understanding about their disease, prognosis and treatment options. This study aimed to assess patient and clinician perceptions of the CA. Methods: The CA included information and diagrams about key aspects of the diagnosis, prognosis, treatment and support. It was designed to be used in clinical consultations and taken home after the consultation. Australian women with DCIS (n=18) participated in structured interviews and clinicians (n=7), including surgeons and radiation oncologists, completed surveys to assess their perceptions of the CA. Main outcome measures included satisfaction with the content, design and diagrams in the CA, and perceptions of the benefits of the CA and its impact on doctor–patient communication. Results: All clinicians and women with DCIS reported that the CA would assist communication and help women understand their diagnosis. Conclusions: This is the first intervention designed to decrease the confusion amongst women with DCIS and improve doctor–patient communication in this area. This study highlights that interventions such as the DCIS communication aid may be a valuable resource for clinicians and women with DCIS. This study also highlights key communication challenges relating to DCIS

Screening for distress in women with gynaecological cancer : Adaptation of the distress thermometer for gynaecological oncology patients

Objective Generic distress screening tools may not recognise the unique concerns reported in some cancer populations. The face and content validity of a screening tool derived from the National Cancer Comprehensive Network distress thermometer and problem list and adapted specifically for women with gynaecological cancer is presented. Methods Building on existing work, panels of clinicians and researchers, and focus groups with women treated for gynaecological cancer, developed a nuanced distress screening tool. Results The clinical reference group used an iterative process to reduce 54 items to 22 across four domains (practical/family/psychological/physical). These items were included in the draft tool, which was reviewed by two focus groups of long-term cancer survivors. Participants unanimously thought the tool was necessary though several changes were recommended. The final draft tool contained a global distress score and 25 items across the four domains. Conclusions This measure provides a structured screening tool tailored to the concerns of women with gynaecological cancer, enhancing communication between clinicians and their patients about potentially identified and unrecognised sources of distress. Future research will focus on establishing sensitivity and specificity of this tool and further assessing its utility in clinical settings for all gynaecological cancers (including rare cancers like vulvar cancer)

Australian women\u27s perceptions of breast cancer risk factors and the risk of developing breast cancer

Background Numerous studies have shown that the majority of women overestimate both their own risk and the populations’ risk of developing breast cancer. A number of factors have been found to correlate with perceived risk. Methods This paper reports on a telephone survey of a nationally representative sample of approximately 3,000 Australian women aged 30 to 69 years, conducted in 2007, and compares the findings with those of a similar survey conducted in 2003. Results There was a clear tendency for respondents to overestimate the proportion of women who will develop breast cancer during their lifetime. Approximately half the respondents perceived themselves as being at the same risk of developing breast cancer as other women their age; older respondents were more likely to perceive themselves to be at a lower than average risk. Family history was recognized as a risk factor for breast cancer, although there was evident confusion in relation to risk from paternal family history. It was also evident that the association between age and risk status is poorly understood, and misconceptions of breast cancer risk factors identified in the previous survey persisted in 2007. Conclusion Overall, these results suggest that there remains an educational challenge if we seek to increase the accuracy of women’s perceptions of their risk for developing breast cancer, primarily in relation to the significance of age and family history as breast cancer risk factors

Research in immunology

Objectives Poor awareness of breast cancer symptoms has been associated with patient delay in seeking help; thus reduced survival, more aggressive treatment, and fewer treatment choices. The aim of this study was to develop a representative picture of Australian women's knowledge of symptoms, experienced potential symptoms, and behavioral responses. Methods A general population sample of approximately 3,000 women aged 30-69 completed a telephone survey; results were compared to previous surveys conducted in 1996 and 2003. Results The most commonly cited potential symptom of breast cancer was a lump in the breast, identified by 86% of respondents (an increase from 75% in 2003). Other commonly mentioned symptoms were discharge from the nipple, pain/soreness, skin puckering, or dimpling; and a change in breast shape. The proportion unable to name any potential symptoms of breast cancer decreased from one in ten in 2003 to approximately one in twenty in 2007. The primary reason for not seeking medical advice in response to a potential symptom was the belief that breast cancer was not present. Conclusions Health promotion efforts need to continue to aim at increasing community understanding of potential breast cancer symptoms and encouraging women to act on potential symptoms by seeking medical advice

Australian women\u27s awareness of breast cancer symptoms and responses to potential symptoms

Poor awareness of breast cancer symptoms has been associated with patient delay in seeking help; thus reduced survival, more aggressive treatment, and fewer treatment choices. The aim of this study was to develop a representative picture of Australian women’s knowledge of symptoms, experienced potential symptoms, and behavioral responses. A general population sample of approximately 3,000 women aged 30–69 completed a telephone survey; results were compared to previous surveys conducted in 1996 and 2003. The most commonly cited potential symptom of breast cancer was a lump in the breast, identified by 86% of respondents (an increase from 75% in 2003). Other commonly mentioned symptoms were discharge from the nipple, pain/soreness, skin puckering, or dimpling; and a change in breast shape. The proportion unable to name any potential symptoms of breast cancer decreased from one in ten in 2003 to approximately one in twenty in 2007. The primary reason for not seeking medical advice in response to a potential symptom was the belief that breast cancer was not present. Health promotion efforts need to continue to aim at increasing community understanding of potential breast cancer symptoms and encouraging women to act on potential symptoms by seeking medical advice

Development of Key Principles and Best Practices for Co-Design in Health with First Nations Australians

Background: While co-design offers potential for equitably engaging First Nations Australians in findings solutions to redressing prevailing disparities, appropriate applications of co-design must align with First Nations Australians&rsquo; culture, values, and worldviews. To achieve this, robust, culturally grounded, and First Nations-determined principles and practices to guide co-design approaches are required. Aims: This project aimed to develop a set of key principles and best practices for co-design in health with First Nations Australians. Methods: A First Nations Australian co-led team conducted a series of Online Yarning Circles (OYC) and individual Yarns with key stakeholders to guide development of key principles and best practice approaches for co-design with First Nations Australians. The Yarns were informed by the findings of a recently conducted comprehensive review, and a Collaborative Yarning Methodology was used to iteratively develop the principles and practices. Results: A total of 25 stakeholders participated in the Yarns, with 72% identifying as First Nations Australian. Analysis led to a set of six key principles and twenty-seven associated best practices for co-design in health with First Nations Australians. The principles were: First Nations leadership; Culturally grounded approach; Respect; Benefit to community; Inclusive partnerships; and Transparency and evaluation. Conclusions: Together, these principles and practices provide a valuable starting point for the future development of guidelines, toolkits, reporting standards, and evaluation criteria to guide applications of co-design with First Nations Australians

Australian women's perceptions of breast cancer risk factors and the risk of developing breast cancer

Background: Numerous studies have shown that the majority of women overestimate both their own risk and the populations' risk of developing breast cancer. A number of factors have been found to correlate with perceived risk. Methods: This paper reports on a telephone survey of a nationally representative sample of approximately 3,000 Australian women aged 30 to 69 years, conducted in 2007, and compares the findings with those of a similar survey conducted in 2003. Results: There was a clear tendency for respondents to overestimate the proportion of women who will develop breast cancer during their lifetime. Approximately half the respondents perceived themselves as being at the same risk of developing breast cancer as other women their age; older respondents were more likely to perceive themselves to be at a lower than average risk. Family history was recognized as a risk factor for breast cancer, although there was evident confusion in relation to risk from paternal family history. It was also evident that the association between age and risk status is poorly understood, and misconceptions of breast cancer risk factors identified in the previous survey persisted in 2007. Conclusion: Overall, these results suggest that there remains an educational challenge if we seek to increase the accuracy of women's perceptions of their risk for developing breast cancer, primarily in relation to the significance of age and family history as breast cancer risk factors